How cosmetic issues resulting from treatment affect my mental health

I step out of the shower and face the stranger looking back at me in the mirror. My thin, brittle hair has more gray in it than before, and my scalp is riddled with bald spots. My forehead feels like a blank canvas because my eyebrows and eyelashes are missing. My teeth are covered with holes and weak spots at the gum line. Tears roll softly down my cheeks.

I wipe them away and instinctually look down at my hands. My fingernails are beginning to grow out, leaving a gap between the bottom of the glittery, beautiful acrylic colors and my cuticles. I’ll have to pay the exorbitant fee to get them redone soon. It’s amazing what makeup, acrylic nails, and wigs can do.

Unfortunately, I wear these things full time — to the point where I’ll draw eyebrows back on after I’ve washed my face for the night, so that I’m never without them. Because of the damage to my teeth, my smile is much smaller than it used to be, in hopes that people won’t notice my dying teeth.

That’s all happening because of my rare disease, its comorbidities, and its treatment. In 2020, I spent nearly two months in the intensive care unit dying from multiorgan failure. I’d developed atypical hemolytic uremic syndrome (aHUS), which caused permanent damage to my kidneys, liver, heart, and uterus. I’ll need chemotherapy for the rest of my life to keep the life-threatening symptoms at bay.

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Keeping up appearances

Most of my long-term cosmetic issues have resulted from treatments rather than from the disease itself. I had to do dialysis for the first five months of my ordeal because I was in kidney failure. Many patients experience hair loss and nail issues while on dialysis. Chemotherapy also can cause hair loss, which has kept my hair short and patchy for the past four years.

My hair is brittle and breaks off constantly now, and my scalp is full of bald spots. Much of my hair turned gray after my initial aHUS attack, which I assume was the result of immense trauma and stress.

Hair loss also affects my eyelashes, eyebrows, and nose. I rarely grow eyebrow hairs, and when I do, those hairs can become ingrown, causing pain and even infections. Without eyelashes, I constantly get tiny hairs, dust, lint, and other debris in my eyes. I have to use a magnifying mirror and tweezers to dig things out of my eyes at least twice a day.

My nails aren’t much better. They’re thin and tear and peel constantly, sometimes deep into my nail bed. They’ve also become discolored at times. Applying nail tips and acrylic protects them from constant breakage.

If I don’t wear glue-on eyelashes, I’ll wear heavy black eyeliner to fake the appearance of small lashes. Fake eyelashes are gorgeous, but removing the heavy glue is a nightmare. It’s designed to last, so I have to rub it roughly to remove it, which can damage my thin eyelids. I also run the risk of getting clumps of glue in my eyes if I’m not careful.

Without my facade, I look as sick as I am. After four years, I’m usually OK with this. But every once in a while, like tonight, I have a hard time staring at the stranger before me.

But after applying some perfectly arched eyebrows, thick black eyeliner, brown, copper, and gold eyeshadow, and glittery bronzer over my freckles, my skin looks alive and healthy again. Add on a gorgeous, long, dark-brown wig with a lace front along the hairline and ringlets, and now the average person can’t even tell that I’m dangerously close to being terminally ill.

“Mind over matter” is something I say a lot. If I look better, I feel better. And my emotional state affects how I feel physically. So I make an effort to look more alive each day, even when I’m at home relaxing.

Is it vain? Maybe a little. But if it keeps me going, then it’s worth it.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.